Patient Advocate

The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to make his daughter better. How to set about it is another matter, and turns out to be a complex and sustained set of illusive problems. While most doctors look at a broad and confusing set of symptoms and try to attach treatments to an entire cohort of partially differentiated patients, the PA’s problem is slightly different. The Patient Advocate, by job definition, is obliged to help one person - in this case, his daughter - his patient. Thus the PA is looking at one narrow and confusing set of symptoms, which makes his problem slightly easier.

Christopher Cairns

About Me

I am the patient advocate of my 40-year-old daughter. She is housebound in St. Paul MN with CFS/ME. This blog presents reports from several lectures or conferences. It also attempts to define, in my own way, the role of a Patient Advocate. The premise is simple. I make my observations in hopes that they might be beneficial to others, in the same spirit of generosity that so many others' comments have been useful to me. These entries are presented for information only purposes. In no way should they be taken as medical advice. I am not a doctor and I do not want to be one.

Followers

Tuesday, June 14, 2011

The blood boils

Exchanges of letters are always interesting - and revealing. One can spend a long time - a life-time - waiting for a response letter like this one from Wanda Jones - to Dr. Joan Grobstein. It is a whopper, a classic of avoidance, and with short-circuited, empty promises. The sophisticated reader can detect a bit of irritation here - even petulance - and a veiled threat too.

Dr. Grobstein's articulate and respectful documentation of misdeeds taking place at the recent CFSAC meeting remains unanswered in substance. It is met by a contemporary "open/closed" mindedness. Frankly, we are sick of this.

Wanda Jones did learn a bit from the preceding exchange, keeping this one short, thus avoiding revealing too much by running on and on. However, she is unwilling to address the main issues, or to take responsibility for the very crude, illogical and inexplicable behavior towards patients at the recent CFSAC meeting, an "event" for which she is responsible. What can be done with such a person? The answer is - nothing can be done. Such people are insulated from reality, and can do whatever they please, subject to the whims of their bosses. While Wanda Jones moves on to more fertile pastures, will her replacement be more just, more reasonable towards ME/CFS patients? Don't count on it.

We are trained in modern times to know that small, seemingly innocuous responses can have big meanings. This letter reveals a complete and total world of indifference. There are those who will say this - Please leave Wanda alone, she is the friend of CFS. Let me tell you that these people are wrong. One more friend like Wanda Jones and ME/CFS patients are finished.

Please do not miss the quotation at the end of her letter.

Here is her letter:

Dr. Grobstein,

We are moving forward to clarify instructions with staff who are supporting future CFSAC meetings.

The resting area we provide at the back of the room, separated by partitions, is a courtesy accommodation we provide to people with CFS who attend the meeting. We are not required to provide footstools, benches, cots, or other types of accommodation that have been requested over many years by persons with CFS. Our videocast of the meetings has provided access to more people than we could ever accommodate in one physical facility, and we will continue to provide that service.

If you choose to attend future meetings, I hope you will find them improved by your suggestions.

36 comments:

In other words, Ms. Jone is saying that we don't know how good she has been to us-honoring our ridiculous requests for access to meetings and respectful treatment that would be accorded attendees at any other meeting, but be warned, those days may be coming to an end...

I always thought Wanda was off the moment she happened to manage to invite John Coffin to the CFSAC in 2009. No, that was the way it was sold to everyone. The truth is, he had to be there to have his face known for the day he would turn around and try to sell the story of the virus being dead. But it isn't dead and it is time we rid ourselves of these people.

Dr. Wanda Jones typifies the archetypal committee chairperson, for whom the process appears to be far more important than the outcome.The CFSAC has therefore achieved very little under her "leadership".

I think that too many are caught up in their own stuff and miss the bigger picture.

Those with ME are barking up the wrong tree. This is a CFS committee. ME/CFS is our own creation but HHS does not recognize it. There are those who are wedded to this as is if it is some major improvement or ultimate solution, but think this is really another trap and distraction and a colossal waste of time.

CFS is what it is. Reasonable accommodations are for a resting area. Nothing more.

Wanda Jones runs the meetings. She is NOT supposed to influence the outcomes. It is an independent advisory committee that is NOT controlled by HHS. That is the purpose.

Straus was very much aware that a trivializing name would mesmerize foolish patients into attacking the syndrome, erasing any progress they made.

If CFSer let the people who can't look beyond their emotional response to this transparent ploy, PULL that toehold back out.... do they honestly think this well induce the CDC to throw the door wide open for ME?

Perhaps in gratitude for helping them to demolish CFS patients and keep them "forever fatigued"?

"Indifference." This is the right word. Dr. Jones works for the US government and she does her job. The government's attitude towards M.E. suffers is clear: indifference. They do not want to see us, hear from us, or even have us exist. They want us out of their way. And they have been successful in keeping us invisible and silent for 30 years. Do we want another 30 years of this?

CFS has hidden and obliterated ME. CFS patients are fatigued. If not, then they do not have CFS. And wildaisy, this has nothing to do with ME sufferers. CFS has kept ME invisible. As are phony ME groups playing the CFS game. Keep playing these games and guess what....

"Mobilizing leadership in science and prevention for a healthier nation"

Our Government and the philanthropic private arms are giving to "Prevention". Billions (not millions) are being granted/given towards prevention rather than diagosing and curing those who are already ill. Economically and scientifically, an ounce of prevention is worth a pound of cure. This is Fact.

However, once we are born, we have "human rights". Those rights include the rights to obtain viable medical diagnosis and treatment. To ignore this, and if patients populations are left untreated/ignored/suppressed or overlooked and patient numbers rise to the millions to tens of millions left untreated...this is tantamount to Genocide.

Actually it is not any longer (what occurred in Incline Village). You can call anything whatever you want, but in medicine if the description does not fit that which is being described then all bets are off.

Sure if it was an honest mistake it would be easy enough to recognize it as what it was - ME. Yet lies are correctable. The perpetrators will not, of course, but those who recognize them will. Unless there are those who want the lies to continue. A dishonest intent will be met with resistance and misinformation and dissembling, as with those who try to keep and justify the use of CFS.

Then you must say "CFS is ME", as you just did on another thread when you assert that CFS "failed". CFS wouldn't "fail" if it were a fatigue illness, because that would be a perfect name for one, so your arguments contradict each other.

Once again, you attack the WPI, CFS Patient Advocate, and all others who "Justify CFS"?

Jill, when you assert that "CFS failed" (because it was a bad name for ME), or that "Things have moved on since then", would you please identify yourself as "Jill A" (These are assertions that imply CFS is ME)

And when you switch to "CFS is a fatigue illness" and "CFS is not ME" therefore contradicting the other Jill, could you let us know by signing it as "Jill B"?

Apparently you are having infantile fun, but you are making things up and I do not wish to. The point is that patients have been lied to and turned away from the meeting. I applaud them for taking a stand and thank you to Dr. Grobstein for the follow-up.

Erik, You're making things up again, which is nothing new, but this is not about anyones philosophy. It is about a public meeting published in the federal register that anyone who so wishes has the right to attend.